The Gross Inequality of Organ Transplants in America

There’s a nationwide organ shortage, but how long patients wait for a transplant can depend on how much money they have.

November 8, 2017

Lisa Waters was 25 years old when, one day in 1995, she
couldn’t raise her right arm without pain in her shoulder. Blood tests revealed
she had a rare autoimmune liver disease, primary biliary cirrhosis, that can cause liver failure but can be delayed
or even forestalled with medication. For the next two decades, Lisa took a drug,
Urso, thrice daily and remained in good health. She rose through the
ranks at The Gap, eventually becoming a
senior vice president, and later left the company to focus on raising her four children
in New Jersey.

All was well until one day on Thanksgiving
weekend two years ago, when she began vomiting blood for no apparent reason. A friend rushed her to
the hospital. “If I hadn’t gone, I probably would have died,” she told me. Doctors
at Manhattan’s Mount Sinai Hospital told Lisa that her PBC had progressed and
she might need a liver transplant soon—if she could get one in time.

There’s a nationwide
organ shortage. More than 115,000 Americans are on waiting lists for organs—mostly kidneys and livers—but because of how transplants are regulated,
the severity of the shortage varies by geography. The United Network for Organ Sharing
(UNOS), the government-sanctioned organization responsible for allocating
organs, divides the country into
eleven regions; for the most part, organs must be transplanted within the same
region in which they’re donated. But not all regions are equally in need. The tworegions
that encompass the Deep South’s “stroke belt,” for instance, have less
severe liver shortages than elsewhere because of a combination
of higher supply and lower
demand.

Courtesy of UNOS.org

Lisa had the bad
luck of being treated Region 9, where
livers are harder to come by. She faced a long waiting list. Being affluent, though, she had more
options than the less fortunate candidates in her region. Since UNOS can’t restrict
transplant candidates like it does organs, her doctor suggested she get listed
in a region with a higher organ supply, to increase her odds of survival. Doing
so isn’t simple or cheap. Some hospitals require patients be local for testing
purposes, be immediately accessible in case an organ becomes available, and
live in the area for up to three months for recuperation, with a caregiver. Out
of pocket, liver transplants can cost more than $565,000; even the best insurance plans rarely cover anything beyond the
operation and brief post-operation hospital stay.

Lisa chose Duke
University Hospital in the mid-southern Region 11, which has a shorter waitlist for livers than Region 9. Her doctors told her that if an organ freed up,
she would need to be at the hospital within hours and remain in the area for
several weeks for post-operation testing and monitoring. So she moved into a
two-bedroom apartment in Raleigh with her sister, who took a leave of absence from
work to be her caregiver. Had Lisa stuck with Mount Sinai in New York, she
would have waited one to two years for an organ. But just 10 days after moving
to North Carolina, she got a call from Duke. A liver was available.

“Transplant tourism”
usually refers to the practice of wealthy people traveling abroad for a new organ. But Americans engage
in domestic transplant tourism, too. According to a New Republic analysis of data compiled by UNOS that catalogues organ transplants in the
United States, between 2014-2016 there were at least 10,161 out-of-region
transplants—nearly 11 percent of all transplants. One study found that from 2008-2013, 2,355 liver transplant candidates—8
percent of the total—travelled greater than 100 miles to other regions to get a
transplant. Americans who can’t afford to do this, and who live in an
organ-starved region, are left to wait—and often die as a result.

For two decades, transplant
surgeons in these regions have pushed UNOS to reduce these geographic and
economic disparities. “It’s supposed to be about fairness—equal need should
have equal opportunity—but it is often about money and transplant centers
protecting their self-interests,” said Sander Florman, a transplant surgeon at
Mount Sinai. “It’s disgraceful.”

UNOS has
considered more than 60 reform proposals in the last five years alone—and
rejected all of them. It’s been difficult to reach consensus due to familiar
geopolitical divisions. Defenders of UNOS’ system, mostly in the relatively
organ-abundant Midwest and South, argue that the regional discrepancies are
overstated, and accuse hospitals in states like New York and California of
doing a poor job of procuring organs. Advocates in poorer states with lesser
shortages say they shouldn’t have to ship organs to their richer counterparts. “Organs should stay in their local region,”
said Seth Karp, director of the Department of Surgery at Vanderbilt
University.

But organs are
already going to people outside their regions. They’re just going to transplant
tourists instead of the neediest patients.

The transplant era began in 1954, when the first successful kidney transplant
was performed in Boston. Livers, hearts, and pancreases followed in the 1960s. In
the 1970s, medical breakthroughs in organ preservation and transplant
rejection allowed patients to live longer and organs to be shared statewide and
even regionally. In 1983, the Food and Drug Administration approved a key
anti-rejection drug, cyclosporine, which spurred an
increase in transplants. The following year, Congress
mandated the creation of a network to “assist organ procurement
organizations in the nationwide distribution of organs equitably among
transplant patients.” Thus, UNOS and its eleven regions were established.

More than 30 years
later, technology has advanced, so that livers and kidneys can now travel by ground, planes and helicopters (and perhaps soon by drone) and remain viable for more than 12 hours.
This makes the existing boundaries obsolete. “The regions are useful for
administrative purposes, but not for determining organ allocation,” said James
Burdick, a surgeon at Johns Hopkins and an UNOS president in the mid-1990s. “We’re
still thinking in those old-fashioned terms of sections of the country.” The
regional inequalities also contravene federal
guidelines mandating “that allocation of scarce organs would be based upon
common medical criteria, not accidents of geography.”

In 2014, a proposal
to reform UNOS’ policies inspired transplant centers in Georgia, Kansas,
Iowa, and Texas to form Keep Transplants Fair, a coalition whose members have spent hundreds of thousands of dollars lobbying Congress to oppose
changes to the UNOS system. The
following year, hospitals in New York, Baltimore, Massachusetts, and
Connecticut formed the Coalition for Organ Distribution Equity, which hired Washington-based lobbying firm Thorn
Run Partners to obtain “reforms to the system for distributing organs
for transplant.” CODE has spent
$260,000 on lobbying Congress and on “public
education.”

This summer, UNOS considered a plan
to allow patients within 150 nautical miles of a donor hospital to qualify for
a transplant, even if the candidate is in another region. This would have
provided low-income patients with more options and reduced the incentive for
people to travel to other regions, but met stiff resistance from states who
benefit from the current system. On October 10, at a meeting in
Chicago, UNOS’ liver committee voted unanimously against the proposal. Doctors
on the coasts felt it did too little to address discrepancies, while doctors in
between thought it went too far. “Financial interests can rule the day in
trying to move forward or to block [change],” said California surgeon Ryutaro
Hirose, a former chair of UNOS’ liver committee and the co-author of the
proposal.

The UNOS committee voted instead to adopt a
much weaker plan from George Loss, a doctor at Ochsner Hospital in New Orleans.
His proposal, which will be voted on by UNOS’ Board of Directors in early
December, calls for shipping organs only when patients are on the verge of
death, affecting very few of them and effectively leaving the existing system
intact. This plan “all but ensures
that where one lives will continue to determine the opportunity for liver
transplant for patients with equal need,” said Florman, the transplant surgeon
at Mount Sinai. “This is change, but it isn’t really changing anything.”

Angie Compton was a
mental health therapy aide in her mid-30s when, about a decade ago, she and her
new husband decided to move from Virginia to upstate New York. Around that
time, doctors discovered she had Lupus, an autoimmune disease that was damaging
her liver. As with Lisa Waters, Angie’s illness progressed slowly. She was able
to function normally for a long time, but that changed in 2016. Angie’s doctor
told her she needed a transplant. Her friends and family members were tested to
see if they could be donors; all came back negative. Since Angie lived in
Region 9, where livers are in short supply, her doctor suggested she get listed
elsewhere.

At the beginning of
2017, Angie was getting ready to move to Georgia, in the hopes of receiving a
transplant from Atlanta’s Emory University Hospital. But the hospital wouldn’t
accept her insurance. Like about 20 percent of people on the transplant waiting list in New York, Angie
was on her state’s Medicaid, which doesn’t cover organ transplants in other
states—and she couldn’t afford to pay out-of-pocket for a transplant in another
region. Unable to travel for an available organ, Angie Compton died on January
6 at the age of 43. Multiple studies detail that Compton was far from alone.
According to a 2014 study in the journal Clinical Transplantation, “Patients with Medicaid health insurance
were signiﬁcantly more likely to die on the waitlist than those with other
insurance,” and “those who received transplants elsewhere had significantly
higher incomes than those who died on the waitlist.”

“Celebrity
or financial status are not factors in getting a transplant,” UNOS states. Transplant travelers belie this claim. A
2013 study in the journal Transplantation
found that “patients who were able to travel had a 74% increased likelihood of
transplantation resulting in a 20% reduction in the risk of death…” The inequities
in organ transplants are racial, too: A 2009
study in the American Journal of
Transplantation found that Hispanics are less likely than whites to
receive transplants, and “these disparities are attributable to geographic
differences in organ availability.” A different, 2015 study found that “migrated patients were more likely
to be male, of white race … and to have private insurance.” Yet another study determined that patients listed at multiple
centers tended to be white, older, highly educated, and have private insurance.

Transplant
tourism also acts as a perverse incentive for hospitals in relatively
organ-rich regions to maintain the status quo, since they benefit from
transplanting well-insured, otherwise healthy patients who require less
expensive care and survive longer, thereby boosting hospital ratings. Patients
with state Medicaid are likelier to have other health problems, dragging down
hospital ratings and driving up health costs. “They are clearly selecting
people of means,” said Raphael Merriman, a liver specialist at California
Pacific Medical Center.

Lisa Waters’s move to North Carolina likely saved her life.
She received a successful transplant, and
spent four weeks recovering in her Raleigh apartment. “Financially, you have to
be able to pay for the stuff that your insurance isn’t going to cover, like
renting a place to stay, all your food, all that,” she told me. Now back in New
Jersey, she spends nearly $40,000 annually on insurance and takes dozens of pills
a day, but feels great. “It was so easy for me,” she said. “For so many people,
they just don’t have the option…. The reality is a lot of people just don’t end
up getting an organ.”